Monday, June 20, 2011

And I Thought The Awareness Campaign Was Going So Well.....Silly Me

I know. These are Angry Birds. I look just like the red one today. 

Listen. Hear that?

*thud thud thud thud*

Yes, that.

*thud thud thud thud*

That would be me banging my head against the top of my little white desk in frustration after reading this article by Arthritis Today.
Sand in your eyes and cotton in your mouth? There’s a name for what you might be experiencing. Sjögren’s syndrome is an autoimmune disease that most commonly affects the lacrimal and salivary glands, which create moisture for the eyes and mouth, respectively. Sjögren’s syndrome causes a reduction in the production of saliva and tears, leading to uncomfortable dryness in the mouth and eyes.
The article goes on for another paltry four whole paragraphs, in which it does not elaborate further about the effects of Sjs. It fails to mention any aspect of the body-wide effects of the disease. Nope. Just dry eyes and mouth. Nothing more to see here, folks. Just keep movin' along....

Aaarrrrggghhh.

This coming from Arthritis Today. A periodical dedicated to rheumatic disorders. For shame - if anyone should know better than to trivialize an autoimmune rheumatic disease IT SHOULD BE THEM. Here's an idea, people: Golly. Since this is a magazine dedicated to ARTHRITIS, perhaps we should at least mention Sjs related joint issues, hm? Of course then the gastrointestinal, skin, urinary tract, vaginal, and fatigue issues just really don't exist, either. Because Sjs is just dry eye and dry mouth.

Um hm. Sure.

After my indignation and crankiness retreats a notch or two, I may just send Arthritis Today a little note. And then remove them from my twitter list. Good grief in a bucket.

10 comments:

annie said...

I think we should all drop them a line or letter stating our displeasure at having something so serious be trivialized, and by a respected rheumatological publication. If they don't speak up for us, who will? Certainly the governments and drug companies will not be interested in funding and finding better drugs for patients. How to contact them? Thanks for making us aware.

annie said...

Sorry Julia, I am having computer glitches and could not link to the article . I finally got through and read the article and some other sjogren's related pieces listed on the sidebar, which give slightly more info, but are still not as informative as they can be. I know where to contact them!

Amy Junod said...

Grrrrrr...
Yadda yadda yadda. This is just the basics that anyone could have googled. The first source selected even. If any effort had been put into the article there would have been some further research to learn how life altering Sjogrens is.
I am seeing many, many comments coming their way.

Jazzcat said...

I understand how you feel, last time I saw a nurse to a blood check, and she ask me why I was doing it, I explained that I have Sjogren, and I have to be monitored regularly. She didn't know of Sjogren, so I said "Dryness syndrome" and that she knew: "oh, you have dry eyes ? But what the use of the blood test then?"
I feel sooo lonely sometimes...

Blogger Mama said...

Wow...just wow! I expect the general public to be that naive about Sjogren's Syndrome. To see a magazine which specializes in arthritis showing their ignorance is saddening.

Do you mind if I repost this on my blog? Giving you the credit of course!! :o) I just loved it!

Julia said...

Sure. Repost away! Spread the word.

BTW, Annie mentioned that the link didn't work for her, is anyone else having problems?

Blogger Mama said...

Thanks Julia!

Amy Junod said...

I read your comment on their site regarding the article. Very well put.

Amy Junod said...

I read your comment on their site regarding the article. Very well put.

Over the River and Through the Woods said...

Julia, gotta believe your comment on their site got some results. There is now a link to a page that provides a more complete description of Sjogren's. Job well done!

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